Noah's chest is open and they are still working on getting all the important lines and tubes put it. Dr. Mitchell is exploring his chest/heart before he hooks him up to the bypass machine. The room is still warm so we have a while before they have him on bypass. Once he is on bypass, Dr. Mitchell will begin working on his heart. His vitals are stable and he is doing well.

Noah has been in the OR since 8:30 am CT. The last update we got, they are still working on getting all the lines in and prepping for the initial broncoscopy. It was strange handing him off. I thought for sure I would break down and cry. Instead I gave him lots of kisses and hugs and smiled. It was almost like I was TRYING to feel emotional and cry but something in me was not letting me do that... It is God who is holding me together and giving me peace. Satan has no grip on me today, and what a day he would have had if God was not in control. Because of the peace I am feeling, I KNOW Noah is going to do fabulous! No worrying needed! Thank you Jesus!
I am sitting on the floor in the surgery family waiting room... It is a huge brand new room and there are MANY families in here waiting just like I am. I pray the the peace I feel right now, that these families feel it also. Will you all reading this please pray for us all here as well?? Thank you once again for following us on our God led journey. Stay tuned for more updates throughout the day. And if you have not already, add this blog to your email list so you can get notification of any new posts I have.

We just signed papers for consent for Noah's open heart surgery. Which by the way will be TOMORROW MORNING! A spot on the surgery schedule JUST opened up and Noah got first dibs. This is great because we were worried that he would catch something between now and Monday. He is at his prime health right now and this gives him a SUPER advantage!

He is now getting all the blood work, EKG, and other pre-op testing done tonight. They will try for an IV later and give him some IV steroids in preparation.

He is first surgical case tomorrow and it will be the longest surgery for him yet. Most likely being all day.

Please pray for Aaron and I to sleep as peacefully as we can tonight. We are going to need our rest. Pray for them to get an IV with as few pokes as possible. And last but CERTAINLY not least, please pray for God's hand in this to be the most evident! Thank you.
Debi Aaron and Baby Noah

Welcome back to Noah's blog! Thank you for following us through our journey and for your continued thoughts and prayers!

I know it has been a long time since we have updated Noah's blog. We will be updating on a more regular basis for a while from here on out.

A week from today, our sweet baby boy will be undergoing his 4th major surgery. This one being the most complex surgery thus far. His heart surgeon came to talk with me the other day about the procedures will be done. It is a TON of information and I will do my best to write as much information about it as I can.

The main and most important step with his heart repair is closing the VSD (the whole between his right and left ventricles). The way he described that procedure is he will kind of make it a tunnel to Noah's pulmonary artery instead of patching the hole and rerouting his PA. He said that in Noah's case, the VSD location makes it easier to do that then in other DORV patients. His next step, he will do a left PA plasty. Basically, manipulating his left PA to open it up, with either a stent or ballooning it open. (There was something else... kind of lost track of my thought... umm....)

He also talked about his right PA and whether or not he will be doing anything with it, seeing as Noah's right lung is so small. Changing the right PA would be extremely extensive and would change the amount of blood flow significantly. He said that he may just leave his right lung alone and focus more on his left 'good' lung and make it as strong as possible. The only thing, he said later down the road, his right lung may start to cause problems, in which case, he would take part of his lung out.

The last step to Noah's repair is his airways. Back in January, Noah had his airway pexy surgery. For his heart repair, Dr. Mitchel will be cutting down the old sutures in order to get to his heart. After the heart is done, they will do a broncoscopy and he will redo the pexy and make adjustments so his trachea and left bronchus are more open. But, if his chest cavity is too swollen after they are done with the heart, Dr. Mitchel will have to leave his chest open and do the pexy and close him up a few days later.

I think that is all the info... that I can remember anyway :)

Noah is the first surgical case that day. And his surgery will pretty much be all day. Dr Mitchel said the heart will be asleep for approximately 3 hours and he will be on bypass until they restart his heart. That is after the 2 to 3 hour prepping of the heart (i.e. cutting the pexy down and opening his chest). Then even longer work on the PA and then the redo of the pexy.

This past week, Noah has been super happy and wanting to play and go on walks ALL day long! It is going to be VERY difficult to "hand him over" to the surgical team and get him back sedated and intubated with a fresh cut down his chest and bed ridden for a while. But I know this must be done so we can continue to have our happy sweet boy running circles around us!

These past couple of days have been really rough and scary. Noah was on the verge of needing to be intubated. They believe he is having so much trouble breathing because of the inflammation due to the para fluenza. He has been on a steroid for a couple days now and it is helping the inflammation and he is also on highflow. Two days ago, I was holding Noah and he was sleeping in my arms. Then he started to fuss a little so I was changing positions to see if he would be more comfortable. He started getting even more mad and started to retract so I set him in his crib to try to soothe him. He started thrashing around and screaming so I went out in the hall to get his nurse to see if she could help me calm him down and I turned back around and he had already started turning blue. Then a bunch of doctors come rushing in and started bagging him. His heart rate was elevated and his O2 saturation level was below 40%. VERY VERY scary! And because his IV had come out the previous day, they started trying for an IV... I think I counted 8 or 9 times and no success! So they decided to let him calm down and later send him to get a PICC line. After his PICC placement, they made him NPO (meaning he could not eat) for the rest of the night for if he needed intubation, his stomach would already be empty and would not risk aspiration. By morning, he was very hungry and fussy so the restarted his feeds. We gave him his first bottle and he chugged it! First time in a very LONG time that he has taken his whole bottle by mouth! Ever since then he has been asking for a bottle every 2 1/2 hours and has been drinking the WHOLE thing! This is amazing and I hope he keeps the momentum going! Sometimes he will still ask for more so we have started offering him an extra ounce and he finishes that too!

So... after rounds this morning, they are starting to ween him off the highflow and steroid. And as long as his breathing becomes more stable, they will not do a broncoscopy and just let this virus finish its course. Please keep praying for continued healing and that our little Noah returns to his happy spirits and health. Thank you!

Today has been a good day and a not so good day.
Good: Noah is back on his full feeds today and for the first time.... he took all three feeds today BY MOUTH!!! I did not have to put any of it through his tube! YAY!!! AND he did this while he is still not feeling 100%! I am so proud of him!
Bad: Noah's fluoroscopy showed narrowing in his trachea. This could be inflamation due to the paraflu or it could mean that some sutures from the airway surgery he had done back in January have broken from all the hard coughing he has been doing. Their plan for him is to wait out the virus over the weekend and possibly do a broncoscopy on Monday to determin if they should re-do the surgery. I am really nervous. His breathing has gotten a little worse the past two days. Doesn't he know that his FIRST BIRTHDAY is NEXT MONTH?!?!?! He sure knows how to make me jump through hoops!
Anyway.. sorry for the short update.. I am exhausted from lack of sleep and I can't remember eveerything from today. I should start writing notes through out the day ;) lol Good Night!

We are back up at Children's again. Noah is not doing so great. His respiratory virus is way worse this week. The antibiotics he was on did not doing anything to help him. He does not have pneumonia, thank God, but his cough is really raspy and congested. His breathing is labored at times and he struggles a little. When he is sleeping he breathes better and is more comfortable, but when he is awake he moans and has quite a bit of discomfort. He is still showing signs of hunger and thirst which is great, we just need him to get over the vomiting. We are giving him pedialyte when he "asks" for a bottle and he drinks it right up! So far, so good... I think when he "asks" for his next bottle, we can try half strength formula. He is currently getting maintenance fluids through his IV.

This morning during rounds, Noah had just got done with a breathing treatment (done by a therapist I was not happy with) He was breathing really heavy and was limp and pale. The doctor on this week, took a look at him and said that if his breathing did not improve in an hour, he would need to be intubated. But as soon as I got him to relax and calm down, he was breathing better. They also took viral swabs and cultures, which means we are in isolation. They put him on helium to help dilate his airways... he sounds like a little itty bitty baby... or a baby chipmunk :) it is cute!

**update-- about 3 hours after I started writing this** ... Bad news is: one of the viral swabs came back positive for parafluenza so we will remain in isolation. Good news is: we now know the source of his sickness and can wait it out in the hospital and help keep him fluid balanced.

Pulomnology came by earlier today to talk to me about his airways. This was before the viral swab came back positive... The pulmonologist was concerned that the sutures that are lifting his trachea and PA's from the pexy surgery in January, have broken away from all the coughing and retching he has been doing this past week. They were planing on doing a fluoroscopy (which is a series of chest x-rays) to determine if his trachea is floppy. If it is, they will most likely do a scope down his throat to look at his airways. If they come to a conclusion that his sutures have in fact broke apart, then they will discuss with Dr Mitchell (his heart/airway surgeon) whether or not to re-do the pexy surgery. It is a strange feeling that she would be concerned about that because just last week I kept getting the feeling that some of the sutures did break! But because she told me this before the viral swab came back positive, I don't know if they will be doing the fluoroscopy anyway.

I am exhausted.

I feel like there is more information I forgot to mention... but I can not think right now. Just please pray for Noah and I, and Aaron too. Thank you so much!